PSCers' Unanswered Research Questions

The following list of questions is taken from our 2014/15 Survey.

Summary

Questions about why people get PSC

  • What is the cause of PSC?
  • Can PSC be prevented?
  • What is PSC doing to me?
  • Who gets PSC?
  • Why is there such variability between PSCers?
  • What environmental factors are involved in PSC?

Questions about curing or halting PSC

  • Can you cure me?
  • Can you halt the progression on PSC?

Questions about diagnosis, prognosis and identifying PSC risks

  • How can PSC be diagnosed early?
  • Why does PSC return after transplant in some people?
  • What is my prognosis?
  • Why does PSC progress quickly in some people?
  • Will I need a transplant?
  • Identify warning signals that my PSC will be aggressive.
  • Identify warning signals that I may get a cancer.

Questions about symptom treatment

  • Can you treat my fatigue and other symptoms?
  • Does exercise help fatigue in PSC?

Questions about helping ourselves

  • What can I do to stay healthy?
  • Should I eat a special diet?

Questions about PSC and other diseases

  • How is PSC linked to Inflammatory Bowel Disease?
  • How is PSC linked to other diseases, especially autoimmune diseases?

Questions about therapies

  • Do antibiotics work in PSC?
  • Does bacterial therapy work in PSC?
  • What does Urso do?

Questions about clinical care

  • How can I get a doctor that understands PSC?

Questions about genetics

  • How are genetics involved in PSC?
  • Are members of my family likely to have PSC?
  • Can you screen for PSC?

28 February 2015